ROHHAD News

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Aarons Wish AaronNeedsIronMan will be fullfilled Read this Post for the Most Incredible News

We have the MOST INCREDIBLE NEWS TO SHARE WITH EVERYONE

Aaron Hunter's Wish #AaronNeedsIronman is happening and Aaron has spoken to Robert Downey Jr

Please read the full post below written by Aarons Mum and Dad

 

 

Our beautiful brave boy Aaron has asked us to share the most amazing news with his special friends fighting ROHHAD Around the world and with everyone who has supported his #AaronNeedsIronman campaign.

It is with the Biggest of Smiles and Happiest of Hearts we share with you all the most incredible news. Wishes can come true and we are so happy to share that our brave boy Aarons WISH to speak to his favourite hero Iron Man and ask for his help to raise awareness for all the children with ROHHAD, has happened !! Thanks to the charity When You Wish Upon a Star

Robert Downey Jr has seen Aaron’s video appeal and the support and kindness he has shown to him since has just been incredible. Aaron received a special FaceTime call from his favourite hero that was magical and such a blessing to watch unfold. During their chat Aaron asked him the question that he has been so desperate to ask;

'Can you please do my #GOMADJUMPFORROHHAD Challenge? and help me raise awareness for all the ROHHAD Kids around the world?'

The most AMAZING NEWS is that Robert said YES!!! He told him he would love to do his challenge and made him feel so special.

Iron Man has answered our brave boys plea for help and in doing so has made him the happiest little boy in the world! He has not stopped smiling since and told us he feels he is the luckiest boy in the world because he is now best friends with Ironman!!

Thanks to Robert Downey Jr, his team and the team at Marvel Universal; Aaron has had the most incredible time of his life. He has recently met Captain America, Falcon and Black Widow during a visit to the film set that seen Aaron have the most magical time.

Aaron has asked us to please say a SPECIAL THANK YOU to everyone who has supported him and helped make his wish to help his special friends come true.

Robert and his fellow Avengers have an incredible fan base and messages of support have been flooding in. To all of the Ducklings (RDJ Fans), Marvel and Avengers fans, friends, family, members of the public and every celebrity who watched liked and shared Aaron’s video appeal on Twitter and Facebook THANK YOU!. We have no doubt your support has helped us reach Robert for Aaron.

When You Wish Upon A Star Charity took Aaron into their hearts and wanted to help him. They are a wonderful children's charity who have helped thousands of terminally ill children's wishes come true and they have just helped make Aaron’s wish come true too. We could not have reached Robert without their help and support and we just want to say a very special THANK YOU to them for helping Aaron achieve his WISH and dream.

When You Wish Upon A Star charity, the ROHHAD Association charity and the press have all been instrumental in helping raise awareness and helping Aaron reach Iron Man too. THANK YOU!

MASSIVE Thank You to Robert Downey Jnr, his own team and the team at Marvel; John, Russell, Chris Evans, Anthony Mackie and Scarlet Johansson for helping make Aaron so incredibly happy. We are deeply grateful for their help and support for Aaron’s Wish to help the other children battling the rare life threatening disease ROHHAD.

The memories of his time talking to his favourite heroes on FaceTime and on set will never leave Aaron or us, they are truly magical and will be cherished forever.

The best bit though is still to come and Aaron cannot wait to see Robert take on his challenge he reckons that it will be EPIC!!

THANK YOU THANK YOU THANK YOU to everyone who has supported Aaron it would never have happened without all of you!

 

 

#AaronNeedsIronman

 

Aaron Hunter has made a new video to his favourite hero IronMan (AKA Robert Downey Jnr).  

He is appealing to his favorite Avenger to help him raise awareness and funds to help his doctors carry out research into his rare terminal disease ROHHAD.  He is asking for his help because some of his friends with ROHHAD have died and he doesn't want anymore of his special friends fighting ROHHAD to die.

All Aaron wants Ironman to do is his #GOMADJUMPFORROHHAD challenge !! oh and he also asks him to come and see him so he can talk to him about it !!

Can you help us make this happen for Aaron ? and all the ROHHAD Children ?  Are you on twitter and facebook if so please follow us and share Aaron's video with his favourite hero.  Do you know anybody who could help make this happen for him ?  It is his wish and dream just now that IronMan helps him in his awareness and challenge campaign.  Please show your support if you can help in any way and if your up for it why not do his challenge too ? Pull those wellies on and #GOMADJUMPFORROHHAD.

Aaron has done amazing things so far he has reached almost 600K people on Facebook via his original video and his challenge has helped to raise £30K in the past year alone which is incredible.  We have a long way to go though, it will cost £300K for 1 year of research and much more to keep it going so please please help us if you can ! Aaron is not giving up he is reaching for the stars (quite literally) so please help him and get tweeting, jumping and sharing !!

Much Thanks all at the ROHHAD Association 

 

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Happy New Year 2017 ! Bring on the Fundraising and Awareness !

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HAPPY HAPPY NEW YEAR TO ALL OF OUR AMAZING SUPPORTERS AND AWESOME ROHHAD FAMILIES.

Apologies we have been a little quiet on the website these past few weeks, we were experiencing some server difficulties which look to be fully resolved now !!

What a fabulous year 2016 was for raising awareness and much needed funds to find a cure.  We had such a fun time at all of our events, from the spring ball to our family Halloween night.  Aaron has done a fabulous job of raising awareness with his social media video and some of the other kids have been doing the same, with families speaking to the press around the world and the kids doing what they can to raise funds and awareness.  THANK YOU to every single person who helped last year, we are deeply grateful for all of the support.

We still have such a long way to go but all of us at the charity are excited for 2017, we are hoping that this will be the year that we raise enough funds for research in the UK to begin ! as well as National and Global awareness ! Also hoping to do some more blogging about the children this affects so that our supporters can gain some insight into ROHHAD and who they are helping.

We have so many exciting things planned and will be posting details of those soon and in the coming months so please keep following our website posts and social media pages @ROHHAD_GLOBAL on twitter and ROHHAD Association on Facebook.

In the meantime Aaron still has ongoing his social media campaign #GOMADJUMPFORROHHAD !!  Our charity Ambassador Emily Middlemas recently completed her challenge and we cant wait to see more people getting involved including the X Factor Finalists.

If you have not done the challenge yet please see our homepage for how too ! and please Get Your Wellies On !!

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Dates of our events just now are;

Saturday the 1st of April 2017 - Masquerade Spring Ball

Sunday the 30th of April - Glasgow Kiltwalk

Saturday the 6th of May - Intu Braehead Shopping Centre, fun day

4th of June - Aberdeen Kiltwalk

Saturday 29th July -  Family Summer Fun Day

20th of August - Dundee Kiltwalk

Saturday 2nd September - Psychic Night

17th September - Edinburgh Kiltwalk

Saturday 28th of October - Family Halloween Disco

we are also hoping to have some bag packing, christmas street collections and possibly a christmas fayre.

(all information including venues, times and fun planned will be available by the end of January on our website)

 

 

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ROHHAD Association is a SCIO. Charity number SC045645

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